Monday, October 17, 2011

Spina Bifida Awareness: Meet Rikky

Today we have the special privilege of hearing from both the mom AND the dad of Rikky!! Thank you Rik for answering the call to DADS to share their heart... we are blessed to hear from both of you!!

I am Lizz, wife to Rik, mother of 3 girls, Rachel-16, Abigail-8 Carmen-3, and Rikky-2,  who was born with Spina Bifida even though I was taking folic acid when he was conceived and had been taking it for quite awhile even though I wasn't planning on getting pregnant, I was currently breast feeding Carmen and my Dr wanted to continue with prenatal vitamins. Rikky has had a very lucky journey so far, he is very healthy and had his surgery for closure, his VP shunt and left hip. He does have to be cathed but does not seem to have any bowel problems yet. Here is my husband's story first and then mine.

Our Journey of SB with Rikky Foresman

Although I am not much of a writer I will do my best to put my thoughts on our journey in words for you all to hear from a Dad’s prospective. Much of our uncertainties came before his birth so most of my story dwells on this timeline. Here goes:

I remember the day but not the date that we found out that there was something wrong with the pregnancy. I know it was around Mother’s Day weekend because Lizz was more upset that she was going to have to sit through this, what is usually a great weekend, in despair and fear because of the news we received at the doctors office that day.

 We went in for a routine ultrasound to see if we were finally going to have the boy that we had been wanting for so long and as the ultrasound tech (which was usually a happy-go-lucky guy) was sitting there quietly looking at the same area over and over again. I began to worry and then he turned and said that he needed to get the doctor. After the doctor looked at the images he asked us to meet him in another room to discuss what they found.

As we waited we began to wonder what it could be and then he came in and said that our baby has Spina Bifida and also Hydrocephalus and that it’s the worst case he had ever seen!! My heart sank and I began to sob! He said that he needed to get us to Geisinger (a larger hospital that specializes in these types of cases) ASAP so that they could discuss our options which would include termination.

As soon as we left the office I called my pastor and we went to his house and prayed HARD and he reassured us (especially me) that God has a plan for us and our baby and that if God doesn’t want him to survive then so be it but in no way are we to try to control whether our child would live or die.

Next was the long waiting game for Geisinger to call and get us in for our consultation. While we waited we researched. I remember sitting there in that room and the woman stating that our child has Spina Bifida and we said “is that it?” and when she said yes we were probably the happiest people to ever hear that our baby had Spina Bifida. AND we got to find out that it was, after all the boy that we had hoped for since that information got lost in the commotion.

Now we can fast forward to the day of the birth…

We had to be there really early for a 1st thing c-section and then got delayed until sometime after lunch but it was worth the wait!! I remember sitting behind that curtain with Lizz and being worried but the second I saw that little boy all worries left as he cried and was breathing!

They laid him down on his belly and showed me the opening in his back (which I have to admit was a little gross) and then rushed him off to the NICU. I don’t want to dwell a lot on the details of the hospital stay except to say that the care my wife and son received was second to none and we met some amazing people in there including the nurse that tended to Lizz in the maternity ward the day of the birth with whom we still keep in contact with.

So, Rikky went in the very next day to have his back closed and then a few days later for his shunt once it was decided that it was needed and then a couple days later home they came!

Life has been very interesting with having to learn how to catheterize and having a physical therapist coming into the home every week but I must say that so far in these the first 2 years I can’t complain about much. Now my wife probably has a bit of a different perspective on things since she is a stay-at-home mom and I work a lot.

Rikky is a normal little boy with one small difference and that is his legs don’t work below the knee. He is smart, witty, funny, handsome and loving which is all I can ask for from any child of mine! Of course, we go to doctor’s appointments on a much more frequent basis with him for check-ups etc… but I guess the most important thing I want everyone to know is that He inspires me everyday!

Mom's story,

Feb 7,2009 I found out that I was pregnant. I was so very surprised! Right away I knew there was something not quite right. I was so scared something was going to happen. I talked about it to my sisters but never said anything to Rik in fear that he would dismiss it and say I was crazy. I had an ultrasound by a midwife around 15 weeks, it was a very old machine and she is not very good at seeing it, but see a "turtle" we did! I was so excited to hear the heartbeat and find out it might be a boy! I have 3 girls already and always wanted a boy! I was so HAPPY!

At 20 weeks Rik and I went for "the" ultrasound that would tell us for sure if it was a boy!
Well it was taking him longer than usual and was very quiet. I knew then, something was wrong, but there is a strong heartbeat so that gives me some comfort. Then he says he needs to get the Dr. Something he has never done before. The Dr pulled us into another room. He said words like Major spine defect, brain damage, skull malformation, still birth, may not be viable to life, lets get you to Geisinger so you can terminate if you choose.

 I feel my baby moving.
 I have heard his heartbeat.
I am not terminating I don't care.
I would rather spend 5 minutes with my baby then to play God and not get any time with him!

The first thing Rik and I did was go to Kenton, Our pastor that has been with Rik since he was young. I knew he could help us calm down and figure out what to do. Kenton said "lets pray, God will help you through this journey!" That Sunday we went to church, it was Mothers Day, the worst one I have ever had because of not knowing anything! But the entire church embraced me and prayed. I have never felt the Holy Spirit before, but it was there that day!

When we finally got to Geisinger the therapist was telling us "Ok this is Spina Bifida and you will have extra ultrasounds, extra appts, different doctors, a group of doctors, a social worker, blah blah"  Rik and I kept waiting for her to drop the horrible news. I finally said "so, what is wrong  with my baby?" She says, "your child will have spina bifida."  Rik and I looked at each other then looked at her started laughing with joy.I said "Is that all? I thought he wasn't going to live! We can handle that! OUR BABY WILL LIVE!"

And live he does.
 There is nothing Rikky won't be able to do if he wants to!
He is such a charmer.
 He can bring the biggest meanest man to his knees and put a smile on their face.
He is loved by anyone who meets him!
 He is very happy and loves to give Kisses!
He has the best big sisters who totally spoil him!
His 3 yr old sister Carmen will come to him when she needs soothing for a hug!

He is my boy and he makes my heart sing,
What a miracle he really is!

Thank you Rik and LIzz for sharing your stories with us!


Heather said...

I would like to hear some grandparents stories. I lived the whole news from a week before my grandsons due date. Lived all of this for 9 months now. Getting very educated and reading everything and joined this site as well as the SBA National web site. My son was out of my considered daughters life and her family. I was the acting dad in this situation. Plus had a granddaughter to help understand how top play with her brother. Thank you for taking the time to do all of this.

Heather said...

Would love to hear some grandparents stories. I played my son through everything. I am very blessed to have my grandson whom has SB, and taught his sister how to play with him. I am blessed that so many people share that I can learn for his future journey. He is 10 months old, so we take one day at a time. Thank all of the parents that kept your miracle babies as we love ours.